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Tuesday, July 8, 2014

Please, eat!

I cried today--big fat tears in the kitchen.

In front of the kids.

I don't hide my emotions from them, but I do try to keep it together normally.

Today, though, it was too much.

The Dancing Queen was complaining of stomach pain. She wasn't touching her food. I tried every trick I have left to get her to eat. I gave her barbeque potato chips for goodness sake! Nothing. She wouldn't eat a thing.

I begged her, pleaded with her to just eat.

She has to eat! This has been weeks now without really eating, on top of a lifetime where she has barely eaten enough. She is looking gaunt. She is feeling sick. She will only get worse if she doesn't eat!!!! I can't let her go; she NEEDS food!!!!!!

I hate to suggest it but would a feeding tube be an option? It's not ideal, but would that help? It's helped my daughter more than I thought possible. I am probably wrong to try to solve problems that really can't be fixed. Sending love and hugs and crying here in Philly too.

I never mind suggestions! I've actually been thinking about a feeding tube. We can't see the GI until the 16th, so that is not a discussion point yet. A feeding tube has been a possibility (or actuality) DQ's entire life. She's managed to keep it away since it was removed as an infant because she has always gained just enough to appease her GI doc. As of today, she has lost 3 pounds in 3 weeks (about 10% of her body weight). I'm guessing a g tube may be on the table. I don't know how well it will work though since she usually vomits anything that goes beyond what she feels her stomach can handle. I don't know if they'd do a J tube or a GJ. She loves food; she just feels full all of the time and nauseated. I'm at a loss.

Having a child with a CHD is like being given an extra sense---the true ability to appreciate life. Each breath, each hug, each meal is a blessing when you've watched your child live off a ventilator, trapped in an ICU bed, being fed through a tube. Each minute is a miracle when you've watched your child almost die and come back to you.

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